HOW SUPPORT HAS CHANGED THEN & NOW:
Glenda and daughter in 1997
Glenda and daughter in 2022
I was first diagnosed with breast cancer in 1996 and then again in 2022. So much has changed in that quarter of a century in terms of the treatment, care and support I received. The first time around, I was 33 and had four children ranging from 15 months to 12 years. We lived on the family property 230 kilometres from the nearest town. I could only go to Townsville or Brisbane for treatment at the time. I had my operation first (a partial mastectomy), then chemo and then radiotherapy. Even though the lump was confined to my breast, they took all my lymph nodes. I ended up staying in Townsville and flying back from Mackay/ Rockhampton and driving back to the property in between treatments. My family helped look after the older kids and my 15-month-old travelled with me. I used to make the trip every three weeks. At that time, an oncologist was based in Mackay two-and-a- half hours away so it wasn’t too far – only a day trip. That went on for the first couple of years. And then it was every six months up to the five-year mark. Being so far out of town, I didn’t have much support from
neighbours. There was another local woman diagnosed after me who I spoke to a couple of times. Fast forward to 2022 when I was diagnosed with triple negative breast cancer in the same breast. By now, my husband and I had moved closer to town and were only 15 minutes from Rockhampton, but I decided to go straight to Brisbane for my treatment and a full mastectomy. I had more support there. I stayed with my mum, my sisters helped with driving me around, and I always had someone with me when I went in for chemo. BREAST CARE NURSE I didn’t have a breast care nurse in 1996. After my operation, I remember someone from Cancer Queensland came to see me at the hospital. She had experienced breast cancer and talked to me about what to expect. For my second diagnosis I have had access to breast care nurses. I contacted one in Brisbane before my operation and we met so that I could ask her what to expect. I knew I was going to have two drains, one on each side, so she let me know what to wear, the bras I needed and how long I was going to be in hospital. She had all the information I needed, which was great.
answer to something specific, like how to manage side effects from treatment, and I share whatever has worked best for me. FINANCIAL SUPPORT The first time around, I could claim some of my travel expenses through MBF. I remember looking into patient travel assistance and it was a big mess. No one seemed to know enough about it and how you could get it. This time, because I’m based closer to my oncologist, I wasn’t eligible for any travel assistance. In some ways, it’s had more of an impact financially this time because I’m working. I’ve got income protection but it’s still not the full amount. My husband works on the farm and nothing’s doing very well because of the weather. Luckily, the oncologist was bulk billing everything and the surgeon was reasonable,
After the operation, she gave me three bras to take home, some ‘knitted knockers’ , a bag to carry my drain and a cushion to put under my arm for support. Most of these had been handmade by volunteers. Thanks to organisations like BCNA, I also received a free Berlei bra as well as vouchers for bras and lightweight inserts. The breast care nurse in Rockhampton, Donna, is fabulous. She told me what I was entitled to, signed me up and said I could phone her if I needed anything. ACCESS TO INFORMATION Back in 1996, we didn’t have the internet and when we did it was crummy. We were flat out trying to get a reliable telephone network. The only resources I was given were printed handouts. I remember getting a book from someone at the hospital that had a little bit of information about what was going to happen. These days, there’s so much information out there. You can join online support groups and BCNA’s Online Network. You can even find groups that focus on your type of breast cancer. I joined a few groups and read a lot, though I don’t really contribute regularly. Occasionally I ask questions online when I want an
which is great. So I really only had out-of-pocket costs for the anaesthetist. I used my frequent flyer points to travel to Brisbane. ONGOING SUPPORT I developed lymphoedema 10 years after my first diagnosis and I’ve also developed neuropathy in my hands and my feet. I have a sleeve for my lymphoedema and access to the best Occupational Therapists (OTs) in the country. The OT in Brisbane gave me a referral for Rockhampton and as soon as I came back the cancer care physio said she’d look after me. I’ve been going to her regularly and she works wonders. I didn’t expect to be diagnosed again 26 years later, but I was more prepared the second time around and the support was generally so much better.
To see if there is a breast care nurse in your area, search McGrath Foundation’s breast care nurse directory or call 1800 183 338 . Sign up to BCNA’s My Journey for articles and resources about: • travel subsidy schemes in your state or territory • living in rural or remote areas • lymphoedema, including causes, symptoms and treatment . Listen to Upfront About Breast Cancer Podcast, Episode 43: In conversation with Tania and Fiona: The challenges of living in a rural area following a breast cancer diagnosis .
Many of the advances that are described in this story are thanks to the advocacy from BCNA and other consumer organisations and advocates. This year BCNA is celebrating its 25-year anniversary and we will be looking back at some of our key advocacy wins across many areas, including: subsidising new drugs and therapies; funding for lymphoedema compression garment programs; addressing the financial burden of breast cancer through programs such as patient assisted transport schemes; and increasing access to breast care nurses. We look forward to reflecting on and celebrating these wins, and will continue to advocate for all those with a breast cancer diagnosis into the future.
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
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